Addison's and adrenal insufficiency (steroid dependency) are time-critical, potentially life-threatening conditions. Use the following resources and tools to get prepared so that if you need to call an ambulance, you receive the best care possible.

Take Control - Be Prepared

If you are concerned about whether your condition will be identified in an emergency, take control and always wear medic alert identification, carry a steroid alert card or adrenal crisis guidelines, and your emergency hydrocortisone injection kit - read more here.

This will mean no matter where you are or who you are with, your steroid dependency can be identified and treated in several ways.

NHS Summary Care Record – highlight your steroid dependency

Having information on your personal Summary Care Record (SCR) highlighting that you are steroid dependent is very important.  A Summary Care Record is a national database that holds electronic records of important patient information such as current medication and allergies. This enables healthcare professionals outside of your GP practice, such as paramedics and ambulance crews, to have better medical information about you to provide you with safer care. It is created from GP medical records - whenever a GP record is updated, the changes are synchronised to SCR.

This information can be critically important during an emergency, such as an adrenal crisis, particularly is someone is too unwell to tell healthcare professionals about their condition. To check if your Summary Care Record is up to date, ring you GP surgery and ask them for more information.

How this information presents on the system may vary from region to region and ambulance services may have different levels and methods of access to SCR’s.  Therefore, it is important that you ask your GP or Endocrine team to place information on the system to say that you are steroid dependent and any other relevant information about your specific care needs. We strongly recommend that you check on a regular basis that your SCR is up to date and is updated if necessary, for example when your treatment, medication or care plan is changed.

The purpose of the Summary Care Record is to improve the care that you receive. If you have previously opted out of having a SCR, or if you have declined to share additional information as part of your SCR, your choice is respected and applied. Regardless of your past decision, you can change your mind at any time.

To check if your Summary Care Record is up to date, ring your GP surgery and ask them for more information. How SCR's are displayed is different Trust to Trust (depending on where you live) so you will need to speak with your GP for any specific questions you may have.

Learn more about Summary Care Records

Always carry a Steroid Alert Card & Emergency Injection Kit

If you are unconscious and your identity cannot be identified, your SCR cannot be accessed. To stop this from happening, always carry medical IDs, including a steroid emergency card and medic alert identification, allowing healthcare professionals to confirm your identity and medical needs.

The simplest thing you can do to identify your steroid dependency in an emergency is to:

• Always wear medic alert identification
• Carry a steroid alert card or adrenal crisis guidelines
• Carry your emergency hydrocortisone injection kit
• Prepare a hospital file read to use in an emergency

This gives you control and means no matter where you are or who you are with, your steroid dependency can be identified and treated in several ways.

This helps others to help you! Show your steroid alert card to ambulance staff and any other health care professionals if you need urgent or emergency care.

Learn more about steroid alert cards

As not all first response crews carry injectable hydrocortisone or are permitted to administer the emergency injection, it is also especially important to carry your own emergency hydrocortisone injection kit and to know how to use it. If you do not have one already, you are strongly advised to contact your GP or consultant about getting the necessary medication for the emergency injection kit.

Calling an Ambulance

If adrenal crisis is suspected, take the following steps:

Step 1: before calling 999 inject yourself, or the person you are caring for, with your hydrocortisone ampoule (100mg). Click here to follow an injection video for support.

Step 2: Seek immediate medical attention - call 999.

Step 3: Clearly state to 999 that you are steroid-dependent and having an adrenal crisis AND describe symptoms, e.g. vomiting, diarrhoea, dehydration, injury/shock.

Step 4: Be prepared with NHS or ADSHG steroid emergency cards to hand over to paramedics.

Step 5: Tell the ambulance crew when they arrive if you have administered extra steroids.

 

What happens when you call 999

Ambulance services will ask specific questions when you call 999.  The first questions asked will be if the patient is breathing, awake and if not awake if the patients breathing is noisy.  Once these questions have been answered, the location of the emergency will be confirmed and then further questions asked to establish the exact problem.

If you have been told by a medical professional that you must always follow a particular course of action if you suspect an adrenal crisis, make sure you declare that information to the 999-call handler. Additionally, remember the keywords to use are:

• I am steroid dependent
• I am/may be in adrenal crisis

As you give further information about your name, address and date of birth to an ambulance call handler, in England it is likely that you are matched to your NHS number. This will enable, where appropriate, for clinical staff to access your Summary Care Record, and depending on the situation your consent may or may not be asked for first. 

You may be informed that a clinician will ring you back. Do not be concerned about this, as when called back you will be able to give more detailed information about your condition.

Visit our emergency page

If you live in the Republic of Ireland 

Within the Republic of Ireland, all ambulances now carry injectable hydrocortisone and home address registration is not offered. Visit our Addison's Ireland page to find out more. 

Ambulance clinical guidelines – improving patient safety

All UK paramedics and clinical staff follow guidance from the Joint Royal Colleges Ambulance Liaison Committee, commonly known as the “JRCALC guidelines”.

In 2022, specific guidelines for steroid-dependent patients were introduced. This includes medicine information for hydrocortisone, which is carried on all the ambulances and can be given to people in adrenal crisis. The introduction of these standalone guidelines is a fantastic step in improving patient safety. The guidelines for treatment are now clearer and easier to access for all ambulance staff.

JRCALC worked together with the Addison’s Disease Self-Help Group to create the guidance and continue to collaborate to make sure it is accurate, up to date and contains clear information on how to manage adrenal emergencies. The guidance is regularly reviewed and updated as and when required.  You can read the ADSHG’s News article about the guidance here, this includes an interview with Dr Alison Walker, the JRCALC Chair.

To improve the training paramedics receive, and to emphasise the importance of these guidelines, the ADSHG provides CPD training on the adrenal crisis for all paramedics.

Paramedic CPD Training

We're working hard to improve emergency care

The ambulance services in the United Kingdom and Ireland are continually improving their support of people with Addison's and adrenal insufficiency, thanks to the lobbying and advocacy of the ADSHG and its members. Keep up-to-date by reading our regular ambulance page in our members' magazine.

	Learn more about our CPD Paramedic training sessions on adrenal crisis management
	News: Standalone Ambulance Guidelines on Steroid Dependency added to JRCALC thanks to work by the ADSHG.

Support

If you do have any concerns about your Summary Care Record please click here to learn more, and speak to your GP surgery or endocrine healthcare team. We are also here to support you.

• For emotional support, please read our 'Reducing the stress of a long-term condition' page
• Visit the Rare Minds Wellbeing Hub
• Speak to others on the online forum - there for you 24/7.
• Meet with others in the Addison's and adrenal insufficiency community through our members' social meetings.